Washington, D.C., Wednesday, June 25, 2009--Twelve members of the board of the National Capital Lyme and Tick-borne Disease Association met with Dr. Ben Beard from the Centers for Disease Control's (CDC) Ft. Collins office and Sarah Wiley from the CDC's Atlanta office to exchange information and discuss their concerns related to Lyme and tick-borne diseases.  A planned three-hour meeting extended to nearly four.

The NatCapLyme board members then presented their concerns during the next two hours, covering the following topics: 

(1) Prevention using the Four Poster technique

(2) CDC website links to IDSA

(3) CDC changes in website information on Lyme testing

(4) Distribution of more and balanced public information

(5) Problems with Lyme testing

(6) Tick testing

(7) Misuse of the CDC case definition

(8) Consistency of use of terms for  ongoing or chronic Lyme

(9) surveillance reporting issues

(10) The need for Lyme disease to become a high priority in research

(11) Issues concerning the use of CDC materials in legal cases.

 

Washington, DC: Dozens of Lyme Disease patients took their fight to Capitol Hill on Wednesday, September 25, 2008.

They say the disease with high numbers in Maryland and northern Virginia is being misdiagnosed and mistreated. And they want Congress to step in.

Fairfax County native Kelly Eisenhart quietly stood off to the side during Wednesday's hearings.

Her mission, though, expressed loud and clear.

"We need education. We need awareness. We need doctors who know about Lyme Disease. And we need doctors who know how to treat," said Eisenhart.

Her own symptoms started when she was a freshman in high school. A mysterious red rash, extreme fatigue, profound pain.

Two years and nearly 40 doctors later, she was finally diagnosed with Lyme Disease.

"I was ok until I relapsed. Nobody would help me. Nobody would help me," said Eisenhart.

And that's why she's among those asking Congress to take a closer look. They argue that because the tick-born disease both woefully misdiagnosed and under-reported, the government isn't aware of how prevalent it is.

"I would like the health aids and the congressmen who attend this briefing today to understand the seriousness of this disease and how debilitating it is for patients," said Sharon Whitehouse, whose son has Lyme Disease.

Perhaps most importantly, they want late-stage Lyme Disease reclassified as a chronic illness in part to require insurance companies to pay for long-term antibiotic therapy.

It's a push that's both political and emotional that patients like Eisenhart say they're not giving up.

"I am very hopeful. I have to be. Because I'm 22 years old. I've got the rest of my life ahead of me. And I want to live," said Eisenhart.

It's been more than 15 years since Congress last took a look at Lyme Disease.

Right now, there's a bill working its way through Congress calling for an additional 20 million in federal funds for Lyme Disease research.

So far the bill has been held up in committee.

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."

The Infectious Diseases Society of America (IDSA) has entered into an agreement with the Attorney General of Connecticut ending his investigation of the Society’s Lyme disease guidelines. Under the agreement, the guidelines remain in effect; but in an effort to clear the air, IDSA is voluntarily agreeing to an extra step: a one-time special review of the Lyme disease guidelines.

The agreement ends the investigation of IDSA and its volunteer guideline panel members without the filing of a complaint or the entry by a court of factual or legal findings, without IDSA paying any fines or penalties, and without imposing on IDSA any restrictions on its right to promulgate guidelines for Lyme disease or any other disease or condition in the manner it believes best serves public health.

“IDSA has agreed to this unique, singular review of our guidelines because the panel will consist solely of physicians and scientists,” said IDSA President Donald Poretz, MD. “We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer, as is the case with all of the medical guidelines issued by the Society, and we look forward to the opportunity to put to rest any questions about them.”

The IDSA Lyme disease guidelines recommend against long-term antibiotic therapy, an unproven and potentially dangerous treatment. A small group of physicians outside the medical mainstream and their patients endorse such long-term treatment, despite the compelling medical evidence that it is ineffective and can have serious, life-threatening complications—and, furthermore, is extremely expensive. This agreement does not change the medical advice to patients: The 2006 Lyme disease guidelines remain in place.

Under the terms of the agreement announced today, IDSA will convene a review panel to conduct a comprehensive review of the Lyme-related literature to determine whether the 2006 guidelines should be revised or updated. While IDSA periodically reviews all of its treatment guidelines in order to keep them current, the agreement allows for an expanded process that includes an opportunity for public presentation and submission of information to ensure that all points of view are presented to and considered by the review panel.

IDSA is voluntarily agreeing to this extra scrutiny in the hope that it will help put to rest assertions that have been made – all of them unfounded – that IDSA has ignored divergent opinions in developing its Lyme disease guidelines. This expanded review process is pertinent to this unique case only. IDSA has not agreed to use it as a model for other IDSA guidelines, nor is IDSA urging other medical organizations and societies to use it.

The main actions of the agreement include:

IDSA strongly disagrees with the Attorney General’s assertion that panel members had significant conflicts of interest. Panel members had no financial interests that would have affected, or been affected by, recommendations in the guidelines. The guidelines recommend ...

[The first week in December], I traveled to New Haven, Connecticut to handle a Social Security disability hearing for an emergency room physician stricken with chronic Lyme disease.  The hearing before an Administrative Law Judge went well and we will win the case. 

However, the client had to wait over 18 months for her hearing before the judge.  In this particular case, the wait did not have a dramatic financial impact on the doctor since she was already collecting benefits from her own private long term disability insurance policy through Northwestern Mutual Life. 

But this is the exception, not the norm.  Less than 20% of my clients have either employer sponsored group ERISA long-term disability plans or private individual disability income protection.  Most of my clients, when faced with the long delays at Social Security disability, are facing either bankruptcy or foreclosure. 

As stated in the article, some die before their case is heard.  I have one such client in the hospital now with stage 4 terminal cancer.  In most cases, "justice delayed is justice denied".  A judge has not even been assigned to the case yet.  Thankfully, I was able to call in a few favors and have Social Security place this case on an expedited review.